well, it was a day...

so, asher was home from school yesterday, which meant that he and i were going to have a delightful day, just the two of us. oh, i had grand plans. he wanted sushi for lunch, and i was going to spend the afternoon doing laundry and tidying up around here.

the best laid plans... sigh...

so, he was feeling fine in the morning. a little tired, but he hadn't slept overly well on the weekend, due to the diuretics waking him up a few times a night. but other than that, he was fine. chipper, funny, playful, laughing hysterically at treehouse cartoons.

we got dressed and headed out for lunch. we got our sushi, sat down, and started to eat. he ate the rice from a couple rolls, but just kept on talking and playing. (he doesn't eat much, so this wasn't unusual, so i thought nothing of it.) he started talking about some of the things he saw around us, making conversation, and pointing out things he wanted me to notice. so i noticed them.

and then i noticed him.

he was navy blue.

still chatting, but slowly becoming less animated.

and then he started shivering.

i asked him if he was cold and wanted to put his coat on, and he said no.

so i reached across the table and touched his hand

and it was cold.

and i don't mean warm with a hint of cool.

it was just. plain. cold.

i watched him for a moment, thinking (read: hoping) he'd just caught a draft and he'd warm up in a minute.

but then he started getting cranky and tired, and he was still blue and still shivering and still cold to the touch.

so i called our amazing dr b, who is on call, and she sent us to the paeds ward at our local hospital for a sat and blood pressure check.

sats were fine (97%), bp was fine (113/59). and she checked his temp. (by now he was starting to feel a bit warm, but nothing too bad....)

underarm temp was 39.2C (102.5F). 

we went off to dr b's office, where he was very irritable, very lethargic, still pretty warm 20 mins after the tylenol at the hospital), and he was complaining that his pacemaker hurt.

so she checked his pacemaker, and yes, it hurt. and the zipper there, along with his G-tube scar were pink.

they're never pink.

so it was looking like there might be an infection in his pacer site. if that happens, it's bad, because those infections tend to spread quickly and if it gets into the pacer pocket, as you might remember, it's got a highway straight to his heart. we've been through this before, and it wasn't fun, to say the least.

off we went to emerg in london. dr b called cardio and gave them a heads-up. she spoke with the NP who was quite concerned (!!) and said that they would need to do a blood culture, and a urine culture (because it's asher, and he has a long, complicated history. urine cultures are now routine for trips to emerg for him).

we were taken right in, and the doc assessed him. yup, he's sick. so he called cardio.

who sent the resident.

who called cardio.

who came down.

and assessed a sleeping and suddenly febrile asher (as in, 20 minutes earlier he was perfectly fine, playing and sitting at a delightfully normal temp. suddenly, he became flushed and warm and curled up on my lap and fell asleep. all that happened in the space of 5 minutes). his temp was back up to 38.7C (101.6F). cardio poked the pacer site, and asher winced and whined, but did not wake up. asher always wakes up for this sort of thing. the cardio poked his pacer, checked his liver, looked in his ear, so yeah, there were a lot of opportunities for my littlest man to wake up. 

and he didn't.

so cardio ordered an ECG. which asher slept through.

and then we were taken upstairs to the cardio clinic for a quick echo, just to check pump function. asher woke up as i put him on the bed, and i gave him the advil our nurse had provided. cardio gave him a tootsie pop, and did the echo, which was fine. then he gave asher another tootsie pop. and he said, "well, his heart is fine, so i think it's just a virus. you can probably go now, but check what they say in emerg."

the doc came over and said that since the chest and abdominal xrays were fine, and the echo and ecg were fine, we could go.

now, at this point, i was not aware of what the NP had said, but rest assured, when i informed dr b that we were coming home, she said, "did they do bloodwork? how was it?" ummm... "they didn't do any bloodwork."

"WHAT?!?!?!?!?!?!" quoth dr b.

it was ruled viral and we were sent home... without bloodwork. no CBC, no culture. both of which are just standard procedure when asher's in emerg.

now, don't get me wrong. i'm quite happy with them not poking my boy and hurting him like that. he's tired of being poked, and i don't like it, either. but um... bloodwork would have given us some answers.

and because the symptoms came on so quickly...

and that has happened before...

in october 2007, for example, when asher had sepsis...

do you kinda think some bloodwork and maybe a culture would be asking too much??

this morning, asher still has a pretty high fever (39.5C, or 103.1F, which is pretty close to his febrile seizure threshold), but as long as the tylenol is doing its thing, he seems ok. fever comes down (he's still warm but not too bad), and he's in a better mood and tormenting poor little Mouse), so right now i'm not overly concerned. it may, in fact, "just" be viral and he'll pull through in a few days.

but still. an important test was not done.

so, i'll admit, i'm a little torn. cardio checked him out as thoroughly as they can, which frankly, is huge. the NP even said that tests were needed. and i think we're at the point now that when tests like this are ordered, i get a little freaxious.

it's good that they took this seriously and did something, so i'm not complaining about that.

but the bloodwork...

or lack thereof...

that worries me a bit. and frustrates me a lot.

i'm almost to the point of moving to another city so that we're closer to SickKids and another children's hospital. don't worry, there are a lot of things keeping us here, and i have to think about the entire family, not just asher. and our paeds can order bloodwork etc here if she wants and i have no issues driving to toronto for cardio if i have to, so we likely won't be moving any time soon... but the idea is there, and it's being considered. i'm just getting to frustrated here. i don't know what to do, frankly. i just don't know...

would i have named my son *asher* if i ever thought he'd turn the colour of *ash*?

sigh...

that's right, folks. asher is, as i type this post, sleeping.

and asher is, as i type this post, grey.

he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.

but the rest of his face...

nose, forehead, around his mouth...

grey.

and he has been for about 40 minutes now.

the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.

but still...

he's grey.

but that's his only symptom.

{calls amazing dr b}

k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.

some quotes from the conversation:

"your instincts aren't usually wrong, heather." "yes, i know..."

if you're concerned enough to call me, you're concerned enough to take him in.

k, i'm gonna say, wake him up, and if he pinks up, then he's probably ok. if he doesn't pink up when you wake him, you're gonna have to take him in.

so, while still on the phone with dr b, i checked on asher again. and he was pink...er. still a bit grey-ish, but not like earlier. so i (probably) won't be taking him in tonight.

that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.

sigh.

so much has happened since the last post... don't worry, some of it's great!

this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:

yesterday morning, i checked my email for the eighth time randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)

which docs and nurses should she talk to???? here's the list:

• dr b, our amazing paediatrician (and dear friend)
• dr russell, our toronto cardiologist
• dr j, in london emerg
• dr g, in london emerg
• dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
• pepy and buffo. because you can't tell asher's story without talking to them.
• dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
• the first cardio we saw in toronto when asher was 8 days old
• dr f, asher's nephrologist
• dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
• sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
• Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
• vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.

as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...

it does pose a problem to someone writing a book about my littlest man.

so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...

but, in a tangentially related note... 

when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,

"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]

and of course, we book the appointment, asher comes home from school, and...

he's hiccupping.

"so?" i hear you asking.

well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...

reflux.

(and angina, but we're not going there right now.)

at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.

but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...

and hoping it's nothing.

he said,

and i quote,

"not good, mommy."

[insert wave of nausea]

"what do you mean? where do you feel sick, sweetie?"

"my heart hurts, mommy."

[insert wave of nausea]

ok, so now i'm going to be a little more specific in my questions:

"does your heart feel tight? like it's being squeezed?" 

"no, not like dat."

"does it feel hot? like it's burning?"

"yeah. like it's burning."

now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux. 

(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)

and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.

sigh.

and let's see... what else has happened today... ah yes!!

i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...

the EA in question...

had no contact with Asher on friday.

other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.

but...

it turns out...

asher doesn't like her, and he's angry with her.

"why?" you ask?

because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.

and when he's irritable like this...

it's best not to mess with him, apparently.

because he'll tell people that you pushed him.

so, there was no incident on friday. but we think we have an idea about where this came from:

you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing. 

and since he's mad at her, he told his own EA and me that he was pushed.

which, of course, leads to an investigation and all kinds of things.

sigh...

so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish

so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't. 

so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)

and then, of course, God weighs in...

so, i'm sitting here, crying over the last post...

and there comes that still, small Voice.

when i shared at church in september, i talked about how God has been my Refuge throughout the "asher journey." and while i have been crying this morning about blithe and bram, i was reminded that

i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

and as i was thinking about that, another thing came back to me:

... and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

so now i ask myself...

because this feels like one of those times "when it's dark and scary and it feels like God has forgotten us"...

if i look back, will i see that God was there?

so i'm looking back,

and yes. i can see that God was there.

He is there in blithe's compassion. He is there in bram and asher's friendship. He is there in their play. and yes, He's there in their arguments, because those are normal and therefore a gift. He is there during our storytimes and mealtimes. He is there when they hug me and tell me they love me. He is there when they hug each other and tell each other "i love you." He is there in the paid bills. He is in the pantry right now, in the form of beans and rice which we will have for supper. He was in blithe's room last night, while she and asher cuddled together all night. He is there in school with each of them right now, allowing them to learn and hang out with friends and enjoy their day. He is here with me right now, holding me and reminding me that, as i said in september,

i can look back - and i do look back - and i can see that, ok, God was there and there and there and there. ok. God was there, so He'll be here.

and then i continued,

and then i can, not look forward because i don't know, but i can look around at what's going on right now.

so, yeah, He didn't give me a crystal ball, and i still don't know what the future holds for my children (all of them), but i don't have to. God has a plan, God knows what He's doing. i don't have control, and i don't see the bigger picture, but that's ok, because God does. and as long as i trust Him, we'll be ok. we'll get through. maybe a little worse for wear, but on the other hand,

much more beautiful

because it's His Love and Beauty that shines in my kids right now. sure, it's a tough life we have in a lot of ways. but He never promised that life would be easy. but He always promises that He is with us throughout our lives. so yeah, i don't know what the future holds. but i know God is holding us now, and that's all i need to know. (although a little "heads up" would still be nice, i'm not gonna lie. {wink})

make sure you're sitting down before you read this post, because it's just. that. awesome!!!!!

saw paeds today. for the dreaded weight check. and....

ready for this?

13.8kg!!!!!!!!!!!!!!!!!!!!!!!!

HE GAINED!!!!!!!!!!!!!!!!!!!!!!

this means that i am not giving him chocolate bars and ice cream and buttered mcdonald's hashbrowns for nothing!!!! and even though he doesn't like to eat all the time, what he does eat is gross enough that it's working!!!!

this also means.....

HE WON'T BE GETTING A TUBE!!!!!!!!!!!!!!!!!!!! oh, i can't even put into words how happy that little nugget makes me!

this also means...

asher is actually climbing the growth chart!!! two months ago, he was at the 10th percentile for weight. he is now nicely at the 15th, which is within the "normal" range. and yes, you read that right, asher can actually be described as "normal." mark this day down in history, folks. asher has never been described as "normal." ever. by anyone. for any reason. ever. so this is a miracle.

this also means...

that i can take FTT (borderline) off his list of conditions on the sidebar!!!

thank-you, everyone, for your prayers/vibes/crossed crossables. today was an absolute gift from God, because only He was able to ensure that asher would gain anything while barely eating. it's wonderful news!!!! i can't even tell you how thrilled i am, and how proud i am of my littlest man today! as soon as i saw the number on that scale, i scooped him up in a giant squeezy hug and started kissing him till he almost peed from laughing... then told me to put him down. LOL

today is a wonderful day.

downer alert: it's late, i'm tired, and asher is just so very skinny. :(

on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.

in fact, i'm anticipating a loss.

asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.

today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).

but today, when he was having his bath... i could count his ribs. and he's got an outtie again.

fyi, asher doesn't usually have an outtie. except when he's skinny skinny.

i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"

but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.

it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.

with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.

and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).

i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.

and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.

so far, racing works. but other than that... nothing. even bribery doesn't work.

this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.

i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.

in case you're wondering...

heart life is hard sometimes.

really hard.

in answer to my question from the other day... this might be as close to "normal" as we get around here... but i'll still take it.

ah, normal... and not even "asher normal" anymore...

or as it turns out, a new "asher normal," but one that is probably as close to the real thing as we're gonna get. here's the low-down:

asher has a pacemaker. i know, i know, i'm master of the obvious. but what i had forgotten about was

asher is obsessed with thomas.

you know, the trains

with magnets

that are strong

that he holds in his hands

all the time

often less than 6 inches from his new gadget. ("go go, gadget heart!" haha, sorry, couldn't resist.)

see where i'm going with this? yeah, it's freaking me out a bit. ok, not "freaking me out," per se. more like... concerning me somewhat. see, magnets are not exactly the best thing for the pacemaker. you should see the booklet i got about what he can and cannot go near. (alas, he cannot play with chain saws or jumper cables, but it is safe for him to have a mammogram, so that's a relief. teehee) but it seems that thomas trains were left off the list entirely. and believe you me, i looked. several times. and they aren't mentioned. not even "magnetic toys." sooo... given that asher loves them so much (especially Percy. dear me, he's obsessed!! just ask dr c.), that he always has at least one in his hand (usually the left, since he's a rightie), that he usually even sleeps with at least one but often more...

is this a problem?

magnets and the like are bad for pacemakers because they can cause the generator to malfunction. that is to say, it will either fire when it doesn't need to, or it won't fire when it needs to. once the magnet or whatever is away from the pacer, it resets itself and goes back to business as usual, but i'm just a little concerned because i know too much and not enough. let me explain.

heart rate changes. it goes down when you rest, and up when you're active. that's the way the heart is designed to work. unless you have a block, as asher does (intermittent AV block, to be specific). when there's a block, the HR doesn't always increase with activity. that's a problem. hence the pacemaker, which keeps asher's heart rate at an acceptable rate. it still doesn't always go up, it is often still at 80, but that's ok (i'm assuming).

now, if the pacemaker malfunctions, it may not tell his heart to beat when it needs to. or it may tell his heart to beat too much. either of these is a wee bit of a problem. oh, sure, it won't likely kill him. we're talking about miniscule amounts of electricity for short periods of time, or a lack thereof. but still! suppose he's sleeping with his beloved percy train/magnet/potential anti-pacing device, and his HR is in the 30s, and the pacer isn't working because of his favourite toy ever?! what then, i ask? what then??

on the other hand, the train magnets might not even be an issue, and this whole rant might be in vain, and i'll feel dumb for even bringing it up and worrying some of my readers (because i know some of you, and you will worry now that you've read this. i wish you wouldn't, but i know you do... mom), so i'm going to be calling london cardio in the morning to find out for sure whether i need to be concerned about this or not. and then, of course, i'll fill you in. because you're dying to know, admit it. ;)

and since asher has to be asher, and he's just not asher with only one thing to mention in a post,

asher had a blue spell this week. (margaret, stop reading for a second.) ok, actually, he's had a few. (ok, you can start reading again.) nothing major, just navy blue mouth and nose. but he wasn't distressed at the time, and he pinked back up after a couple minutes, for the most part. but the first time he did it, he was sitting at the table eating some yogurt (fat-free, of course) and he just... turned blue. and then... turned pink again. but nothing else changed, just his colour. no shortness of breath, no dizziness, no sweating, just happy little asher enjoying his snack. so i called our paeds and mentioned it to her (emphasizing, of course, that the blue was his only symptom and please please please don't send us to london over something like this but really i thought the blue spells were supposed to stop after the fontan and yet here he is turning blue for no apparent reason what's up with that???). and of course, being the good doc she is, she called cardio. in toronto. london would probably just blame it on the lighting and how i don't know asher's colour. (oops, did i type that out loud? sorry about that.) so apparently, dr r, my fave cardio, responded with, "no, i don't think it's something to worry about. we never really figured out why he was having blue spells before, actually, so i don't think this is anything to worry about."

i love her.

even though i know some of you are now wondering why it wouldn't worry them that he's still turning blue and they never figured out why this was happening even before the fontan. it just means that it (likely) isn't related to function, so they're not worried.

and therefore, neither am i. which makes me happy. and a little nauseous, but amusedly so, since a blue spell they can't explain isn't worrisome. see what i mean when i refer to "asher normal"?

and one more little asher tidbit. he's skinny. oh, sure, i know he was never the biggest kid out there to start with. he's only in the 25 percentile for height and weight. but this fat-free diet bothers me. (don't read the rest of this paragraph, rachel.) he's so skinny now. i mean, really skinny. i was dressing him today and i took a good look at him, and i wanted to cry. he is pretty much just skin and bones anymore. i can literally count his ribs. i can trace the outline of his pacemaker. he has legs like bram, for crying out loud!! (bram's a stick, for readers who have never met him.) his arms look awful, his knees are knobby and weird-looking... you get the idea. he looks awful! he used to be my little tank. short, yes, but brawny and barrel-chested and strong. now i'm reminded of when he was labelled FTT after he got his GJ-tube. it just makes me so sad to see him like this. i want so badly to just start giving him fatty food again, to help him gain weight again and get back to being my chubby little heart kid. but i can't, because of the chylo. which sucks. and we still have a week of this diet! it's awful!

but for now, i'll just breathe and remember that this, too, shall pass, and that he's made it through so much worse. but every mom knows how disheartening it is to see her precious baby lose weight to this degree. or maybe you don't. and that's a good thing. enjoy. :) so i'm breathing, and this, too, shall pass.

(ok, rachel, you can start reading again.)

in other news...

• ethan is still at sick kids. i talked to his momma today, and they still don't know fully what's going on with him. they're still not treating the bacteria in his lungs because he isn't symptomatic enough, apparently, and they want to send him home soon. needless to say, mom is not on board with this idea. especially since they want him to go home on daily antibiotic prophylaxis through his PICC line, which she would have to do, and she will have to suction him before every meal (they suspect he aspirates). and keep in mind, she'd have to pay for the suction machine. and keep in mind, she has six other kids. and keep in mind, she's exhausted and stressed out and very concerned about her baby. so please hold them in the Light right now. she is beside herself lately, not knowing what to do and having some trouble coping a bit, and her sweet little baby (who is absolutely adorable, by the way) doesn't seem to be getting better, only sicker. so they really need prayer.
• mia is now home. you'll recall that mia is the 7-year-old who was in an accident and had to have some hefty reconstructive surgery done earlier this month. well! they sent her home. she's not 100% yet and faces a long road to recovery, but going home is definitely a step in the right direction, so please continue to pray/etc for mia and her momma mary and their family.
• taylor is either home or going home in the next couple days. he is the little boy who weighed 13 lbs at 16 months of age. yeah. home. i'm sure sure what's going on with him, but i know they're out of sick kids.
• little hannah was transfered to london this week for the rest of her post-op treatment. this is bittersweet: on the one hand, london can handle everything from here on out, and this brings them much closer to home (i'm thinking of going up to visit them tomorrow, actually), but mom rachel was very opposed to the transfer, understandably feeling much more comfortable in toronto. the other issue with hannah now is that she also has chylothorax (hence the "don't read this, rachel" comments), and doesn't seem to be tolerating her new formula. she now has an NG-tube, which mom is becoming a pro at inserting (i've done it, it's not fun, but we gotta do what we gotta do, sadly), so that may help somewhat with the formula intake. i'll post more about hannah when i know. but in the meantime, please pray for them, as well.
• please pray for my friend sue's baby, levi. he has a rare condition which requires meticulous care, lots of appointments, and even more bloodwork. it's very stressful, especially given the nature of the condition, which is scary. he is only a couple months old, but has already spent too much time in hospitals, especially in critial care units. please hold them in the Light. i'll update you periodically on levi's progress, too.
• hunter, one of asher's single ventricle cohorts, is going in tomorrow for his fenestration closure. this is done in the cath lab, and they close the hole in the fontan. they will also be checking out function and his narrow jugular, but no one expects there to be issues with those. but still, it's nerve-wracking, so please pray for hunter (and mom, drea) tomorrow.

anyway, that's the update as of tonight. thanks for enduring the marathon post. i'll try to keep them more brief in the future. which likely won't work, but i'll try. ttyl!

I WASN'T EVEN TOLD TO LOOK FOR THESE SYMPTOMS TILL I GOT HERE!!!!

so, last night i asked asher's nurse for some information about arrhythmia. i knew they had pamphlets and booklets about it, but i was "stuck" in his room, so i couldn't go hunting them down. but they love it here when parents ask questions and want information. so... she got me a pamphlet and printed off several pages about it.

and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.

so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse  and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."

excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."

this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes." "honey, does everything go black sometimes when you're awake?" "yes." "a lot?" "yes."

he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.

so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...

i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...

i just want to cry.

oh, please tell me this is all just some horrible dream...

so, we were supposed to go home today. either tubeless or with a JP drain. instead...

we're staying put.

so far, since tuesday night, asher has drained over 500 ml from his chest. the chest x-ray this morning showed some improvement, but it's not gone, and liz wouldn't even call it "good." just "better." and it's still draining, albeit slowly. so the tube is staying in. we also have to get asher walking around and doing some deep breathing and coughing. that should help, especially because he has been splinting his right side (where the tube is). so that sucks.

then liz kept talking.

asher has been showing some weird rhythms while we've been here, and his heart rate is sitting in the 40s and 50s. not good. they've already talked to toronto, who said that asher should be on a holter for 24 hours, then they will discuss him in cardio conference on monday afternoon. at that time, we will either go home...

or to toronto...

for a pacemaker.

because this new rhythm he has is dangerous.

i'm completely heartbroken and terrified and confused. asher was asleep when they put the holter on, but he won't be happy when he wakes up. and he's really going to unimpressed when we make him walk around later today.

please pray/send good vibes/cross your crossables... whatever it is you do, please please do it now. thanks.

so, um, yeah, about the last post...

disregard it.

because within an hour of publishing that post, asher was back to his usual self. chatty, smiling, "i just love you, mommy," "i want play with train table, mommy"... yeah. his colour is better (though still on the pale side, but much better), his appetite is coming back, he's drinking more... yeah. sorry for the scare. i was terrified last night, but as of this afternoon, we're just waiting for the draining to stop. it's getting slower, so i'm thinking we'll only be here a few more days. (frankly, i'm holding out for thursday and joanna's yummy-sounding peanut butter and banana muffins. LOL)

i'm baaaa-aaack... with mixed news

thank-you so much to wendy and mom for keeping the blogosphere up-to-speed on the goings-on in asherland over the weekend. i was much too busy visiting with blithe and bram. and don't worry, wen, you did just fine. lol so thank-you. <3

so i'll get the good news out there first, so no one has a heart attack when they see this on facebook (wendy and tanna, i'm looking at you!)...

asher is now in a much better mood, having visited with his brother and sister two days in a row. he really misses them, and i know they miss him, too, so it was lovely to see them all together. asher and bram had tons of fun playing with the train table in the playroom. the kids were even enough to inspire asher to walk down the hall... under much protest, i should add, but he did it, nonetheless, since it meant play-time with his brother and sister. so that's lovely.

and before i forget, his drainage tested negative for chylothorax. wendy did a great job describing it the other day, but for those who don't remember, a brief re-cap: during heart surgery, it is possible for a lymph node to get nicked. the lymph nodes take fat out of the blood, and when it is nicked, the fat (chyle, pronounced "kyle") leaks out into the cavity around the lungs and heart. left untreated (treatment is a fat-free diet for 6 weeks), it will slowly suffocate the patient. asher had it after his glenn and it sucked, to be honest, so when they were concerned about it on the weekend, i was worried. but it's negative, so i'm happy.

he is also eating more. last night at midnight he asked for eggs, so i got him scrambled eggs and hashbrowns for breakfast, and he ate more this morning than he has all week, which is encouraging. since he is usually a bottomless pit, it has been difficult seeing how little he wanted to eat, but he seems to be returning to normal-ish eating again, so HOORAY!!!

now for the not-so-good news.

my mother posted last night about asher's poor fluid intake. their goal is for him to get 910 ml of fluid a day. by yesterday evening, he'd had 334. hence the threat of an NG-tube. understandably, asher did not like that idea. in fact, he clamped his hands over his nose and started crying, "no! i not want tube in my nose! i not want tube!" i told him that he would have to have a tube if he didn't start drinking. over the next 2 hours, he drank 250 ml. still not enough, but much better than before. and this morning, we have had the same conversation every half hour or so. "asher, do you want something to drink?" "no." "do you want a tube?" "no, i want apple juice, please." works like a charm; he's had almost 200mls so far.

now the bad news. sigh.

asher's blood pressure has been (thanks to his special "old man cocktail" of a diurretic, ACE-inhibitor and beta blocker) perfect for several months now. 80s over 50s. beautiful. but over the last couple of days, it's been going up. and up. and up. yesterday at one point, it was 114/65. to put that into perspective, mine is 110/70. yeah. he isn't as puffy anymore, thanks to  a combination of 2 diurretics (HCT - his usual one - and metalozone. no lasix for asher because of his kidneys), but there still is some residual puffiness around his eyes, but he can open them fully, so no big deal. that being said, the only reason his fluids are even balanced at this decreased level... is because of the chest drainage. even with 2 diurretics, he isn't peeing as much as they'd like. however, last night he was refluxing pretty badly (i could hear it, and for the first time in his life - and remember he has a history of "severe GERD" - he was complaining that it hurt) and he was sweating. and by "sweating," i mean that he soaked through his sheets and jammies in 10 minutes. soaked them! you could have wrung them out! disgusting!! and in 10 minutes. yeah. the nurses kept asking if he's like this at home, because some kids sweat in their sleep. i told them that asher usually sleeps under 3 or 4 blankets and he never sweats. the nurse... the heart nurse... who deals with this sort of thing all the time... was really worried.

now, i know there are some of you out there who read this paragraph and have small coronaries of your own. yeah. that's about where i was at last night. and i'll admit, i'm still a bit concerned, since asher is still very pale. but, i'm aware that there are some of you reading this who are scratching your head and going, "why is heartburn and sweating so concerning?" so here you go... a crash course in severe CHD, ie, the list all severe heart moms memorize shortly after diagnosis:

• paleness and increased cyanosis (blue spells)
• puffiness
• increased blood pressure
• decreased urinary output
• irritability
• reflux/heartburn and vomiting
• decreased appetite
• sweating

read this list over again, then re-read my description of him above. yeah. quite similar, wouldn't you say? and for the uninitiated... that's the list of symptoms of CHF. congestive heart failure. yeah.

so please continue to pray/send good vibes/cross your crossables... whatever it is you do, please keep doing it. asher has a looooooooonnnnnnnnggggggg history of CHF (hence his old man cocktail, which he has been on for quite some time... like, forever) and believe me, it's just as scary now as it was when i first brought him home after the hybrid. what's even worse is when you're used to it... which i am. and when you expect it... which i do.

so there you go, the latest update. i'm off to grab a coffee and some lunch and head up to order asher's lunch. how awesome is that, eh?? i actually get to order him lunch, instead of going to the kitchen to grab a bottle of formula!!! i could get used to this! although, i have to say this... i've waited so long to see asher eating and drinking, swallowing with ease... but now i'm disgusted by it at the same time because honestly, he's the loudest swallower i've ever met!!!! and frankly, i don't think there's a more disgusting sound in the world than the sound of swallowing. blech!! and i'd feel guilty about saying any of this, except that wendy, another heart/tube mom has also heard asher drinking, and she agrees. yuck. LOL

because it's asher, and nothing is ever straightforward with asher

so, once again, asher is doing what asher does.

making something simple(-ish) into something far more complicated.

hence the nickname "asher crasher."

asher has had a bit of a fever all day, and has been tachypnic (breathing fast) off and on all day. he isn't working to breathe, there is no distress, but his resps tonight are 64 to 67 breaths per minute, when his baseline is mid- to high-30s. when the doc came in to check him tonight (after the nurse went to get her), she found that air entry is decreased to the bases, which means, in real english, that when he breathes, the air isn't getting down to the bottom of his lungs. his breathing is very shallow. and that's a problem, since it means that he is not taking in as much oxygen with each breath as he should/could be, which means, predictably, that his sats are lower than they should be. mid- to high-80s, when they have usually been in the low- to mid-90s.

the cause, in my own humble opinion, is that they were a bit too aggressive with asher's chest drains today. just this morning they took the drains off suction and removed one of them. this left the only remaining drain to remove all the fluid, which is fine, but it wasn't set up to suck it out anymore, which makes it more difficult for the fluid to get out. this, you can imagine, causes fluid to build up in the chest, which takes up more room, creates pressure around the lungs, and prevents them from filling properly with air which is needed to oxygenate the blood, thereby lowering sats. when they removed the left JP today, the entire length of tubing inside was clotted. basically, a foot-long blood clot. in my opinion, this made it well nigh impossible for fluid to drain through that tube, which led them to believe that the drainage was slowing enough to remove the tube.

this evening, they have put the remaining tube back on suction, and lo and behold, more drainage! more in one hour than all day, in fact! they are currently monitoring asher's breathing, and if it does not improve (slower rate + increased air entry to bases), we will be going for a chest x-ray.

asher had been doing so well up until now. it's just a bump, but a stressful one, nonetheless. and when you figure in the fact that he does not like to move, going downstairs for a chest x-ray will be unpleasant to say the least. so please pray/think positive/send good vibes... whatever it is you do, please do it now. the doc will be reassessing at midnight, and we would all like to find better air entry and continued/increased drainage. thanks so much!

lessons learned on pre-op day

1. if you pull out of your driveway in st thomas at 4:48am, you will pull into your beautiful parking spot near the elevators on P1 at SickKids in toronto at 6:58am. and you will be half an hour early for bloodwork.

2. if you pull into the drive-thru at timmy's at 4:53am, you are too early for a breakfast sandwich, so you have to get a bagel with cream cheese instead. ah, well, it served its purpose.

3. shoppers drug mart at sick kids does not, in fact, open at 7am.

4. asher is a little too well-known at sick kids. the clinic nurse today actually said to me, "i don't really need to teach you anything, do i? you've been through this all so many times before. if they gave out frequent flyer points here, you'd have tons!" yeah.

5. i look fantasic. LOL i saw the research nurse who followed asher during the last few months of the enalapril study back in the day. last time she saw me, i was fat, crazy/depressed, my hair was longer and blond, and now i'm none of the above. LOL

6. i heart medical research. yes, i signed asher up for two more studies, to be done in the OR prior to bypass and in the two days following surgery.

7. the surgical fellow has a great sense of humour. he liked my idea of sending asher to live with the surgeon for a week and then decide if the fontan is a good idea. more oxygen = more energy. nuff said.

8. i could have done the informed consent bit myself. stroke, heart attack, death, bleeding, chylothorax, etc... yup, i knew them all, including what causes them, and what to do about them.

9. legally, the surgical fellow has to go through the informed consent bit with me.

10. asher doesn't smoke, nor is he pregnant, but he does have heart disease. (if you've filled out the questionnaire for anaesthesia, you're laughing, i know.)

11. when the surgeon says that he'll be there at 11:30, he really means that he'll have to be paged at 4:15.

12. being low on T-cells is not the same as being immunodeficient or immunocompromised, but still needs to be treated as though it is the same. because if you're T-cell deficient, you need irradiated blood products. but if you're just low on T-cells, you're not T-cell deficient, but you still need irradiated blood products, and a follow-up with immunology. even though you're not immunodeficient, just lacking some T-cells. WHAT?!?!?!?!?!?!?!

13. i don't understand immunology. (ok, so this wasn't a new lesson i learned today, but it was most definitely reinforced for me today. CAN ANYONE EXPLAIN IMMUNO TO ME?!?!?!?!?!?!?!?! GAH!!!!!!!!!!!)

14. nothing beats a 9 cent venti chai latte. except, perhaps, an 8 cent venti chai latte.

15. and especially except a lunch of carbs, gravy, salt, deep-fried trans-fats, and hot dogs. mmm... lunch....

16. asher has more energy than anyone i know.

17. the surgeon is not keen on taking asher for a week. hmm, wonder why???

18. the word "routine" can be used to describe asher's heart stuff!!!!! can you believe it?!?! "this should just be a routine fontan." i have tears in my eyes just remembering dr c saying that.

19. asher, the ham, who lives to perform... will not perform on cue. he's been looking forward for days to telling dr c that "i not hab tube anymore" and when dr c walked in the room, asher did his "hmph" and wouldn't look at him. but he did pick his nose. asher, that is, not dr c.

20. that when you're sitting in clinic, 8 days before the final stage... nothing else matters. the realization that this is actually happening is heartbreaking, terrifying, thrilling, nauseating, and leaves you not knowing whether you want to cry or vomit. or maybe both. so who cares about all those stupid, meaningless, non-fontan questions you have. they don't matter. what matters is that in one week, you're handing over your baby to someone you've only met a handful of times, and he's going to do disgusting things to the only non-redundant organ in your baby's body, with no room for error. and you're going to sit down the hall all day and wait for the surgeon to come back early, but praying to God he takes all day. and that now, even more than ever before, the clock is ticking, time is running out... and all you want to do is hold your baby and watch him and cherish every breath and memorize everything, learn every freckle and ticklish spot, and beg God that you never forget, just in case...........

21. if you pay for parking at 4:48pm, you will turn onto the street 5 minutes later. and you will arrive in hamilton at 8:31pm.

yeah. long day. ugh.

but thanks for being there, diane. you helped more than you know. :)

yup, it's time for the fontan...

so, yeah, asher hasn't been doing so well lately. all week, actually. he's not sick or anything... unless you count heart disease, in which case, he's one sick little boy.

i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.

(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)

so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.

and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.

because it's not enough with asher's stuff...

so much has happened recently around here...

asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.

i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)

on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)

it's a rollercoaster with this kid, it really is

so karin talked to tomorrow's attending, and he suggested waiting till tomorrow to do the LP. the idea is this: if asher does anything, well, asher-ish, there will be a whole hospital of people who can handle it. whereas right now, there's not so many people around, so it wouldn't be as easy to handle any asher-esque complications. as for the infection itself, he doesn't believe there would be too much of a change overnight, so it's reasonable to wait till morning. he starts at 8, and karin will try to get him to come see asher early, and we'll get on top of this as quickly as possible.

in the meantime, they're doubling his doses of antibiotics to meningitis doses, and hopefully that will do something. because, as i said in the last post, he's been on these 2 big meds for over 24 hours, and he's only getting worse. karin also gave me a heads-up that they might be changing his meds tomorrow. apparently, ampicillin isn't commonly given to older kids like asher. they're reserved for younger kids. so they may decide to switch it to vancomycin.

frankly, i don't like that idea. i know it's probably for the best in some ways, but asher's been on vanco before, and it wasn't pretty. it tends to destroy his iv's. and since he's a VERY difficult poke, it often takes several attempts to get a new IV started. and since they blow with almost every dose, you can see why this is not my favourite part of the plan. i mean, i get the whole "do what you gotta do" thing, but i don't want my baby to get hurt again. it took at least 6 pokes yesterday to get this one line in, and his hand is already looking puffy (though still soft, so we're just watching it and keeping our fingers crossed).

so that's the plan as of right now. i have no idea what tomorrow will bring, but i'm trusting God to take care of my boy. He's gotten him through some pretty scary times before, so let's just pray that He'll bring asher through this one, too.

i'll post tomorrow with the details, as i know them. so, yeah. ttyl.

ok, so i was wrong about one little detail.

he's getting oxygen right now. he's only on 1 litre, but it is on. they'll likely be able to turn it off once he falls asleep, but for now, it's on. sorry about that.

plus ca change...... sigh....

ok, so remember the other day when i said that everything was going swimmingly and asher has never been healthier and more stable than he is right now? yeah. forget that. sigh.

as you may or may not know, summer is not asher's friend. he loves the sunshine, and he loves being outside, playing in the sandbox, driving around in his little tykes car, drawing with sidewalk chalk, riding his trike, you know, all that fun - and normal! - 2-year-old stuff. but, alas, summer does not return to love. heat and humidity really take a lot out of him, unfortunately. and since we live where we do, there's a lot of humidity. (as for heat, yeah, where's this global warming we're being told about? i mean, would it be too much to ask to have temps above 23C?!?! i mean, seriously!!! anyhoo...)

due to the heat wave this week, asher wasn't looking so good. very pale and sweaty, not much energy, and so on. and blue spells. yeah. he's been having blue spells all week. but again, summer is not an ideal time for my little man. so he's been looking pretty bad this week. but, the weather wasn't nice, so i didn't think much of it. just brushed it off, knowing this is what happens. (that being said, he slept at his dad's place on monday night, because his apartment is cooler than the upstairs at my place, and since ash was looking pretty rough at dinner in the cool kitchen, i sent him to ed's.) but other than that, i brushed it all of.

and then came a storm on thursday, and that broke the humidity nicely. so friday was GORGEOUS!!! asher spent most of the day outside playing, making wonderful memories (i hope) with his brother and sister in the backyard. but...

he turned blue again a few times. not too badly. i mean, i've seen him worse, and recently, at that. but still, it wasn't hot, it wasn't humid, so really, ash should not have been doing this.

at dinner on friday, he was blue. and i don't mean a pretty shade of baby blue. i mean, his mouth was navy blue, and his hands were blue-grey and COLD!!! so needless to say, i took him to emerg. if it was still hot and humid, i wouldn't have thought much of it, and moved on with my day. but it wasn't. and he was not looking good. still playful, mind you, so i wondered if i was overreacting a bit, but i can't really be too careful with ash when he does this, so i took him in.

and of course, true to form, we got there and he was great. good colour, playful, vitals were great. seriously, he played the whole time we were there.

and the resident came to see him, and i said to him, "yeah, he's looking great, he's got lots of energy, he hasn't had a blue spell the whole time we've been here, so i'm happy to just take him home now." he seemed cool with that, so he went to chat with the attending. who sent in a nurse to check his sats (can't send him home with blue spells without checking the sats). and they were... sit down... 69%!!!!!!!! and since ash usually sits in the low 80s, this was a HUGE problem. we moved the probe around, putting it on his finger, his thumb, and still 69-74%. so we went out into the hall and tried another machine, hoping it would give us a better reading. nope. still low 70s. ugh. so we had him sit down, and put the probe on a toe. and it was still low 70s. after a few minutes of resting, though, it crept back up to the low 80s. but again, that was after some rest. so....

chest x-ray, ecg, and bloodwork (just a cbc this time, so they did a finger poke). everything looked fine, although his haemoglobin was only a bit higher than cardio wanted (they said, "if it's below 130, we'll have to admit him" which means transfusion). (and why do we care about haemoglobin? haemoglobin is the fancy-schmancy name for red blood cells. these carry oxygen to the body. hypoplasts/single ventricles usually have high haemoglobin to compensate for the low oxygen levels. if it gets too low, then there won't be enough oxygen in the blood, which shows up as low sats. transfusion = higher haemoglobin = higher sats. there you go. a quick phlebotomy lesson. feel enlightened? you should. lol) ok, so cardio wanted to see something higher than 130. asher usually sits in the 170s at least. last night, he was at 140. so we got to go home! hooray!!! but wow! that was close, eh?? eep!

well, then this morning, blithe and bram got up at their usual 7:30-ish. which is usually when asher gets up. and he woke up. crying. so he came in and cuddled up with me. and fell right to sleep (with charlie. seriously, he was using the dog as a pillow. too cute!) and he stayed asleep. all morning. i got up around 11 (we didn't get home from emerg last night till after 1, so i was i tiiiiiredddd!!! and i thought ash was feeling the same, so i didn't think much of him sleeping in. though, i'll admit, that boy can run on surprisingly little sleep sometimes, and he never sleeps in. he gets up with the other kids every day, no matter what) and i thought ash would get up at the same time... which he didn't. he just stayed upstairs. so i let him stay, thinking he was playing with one of his toys or something and would be right down. nope. he fell asleep again. which he doesn't do. ever. i went up to check on him after a while, and he was feeling pretty warm, so i grabbed a thermometer and.... 38.1!!! i even checked twice, just to make sure!!! and it was under his arm, which means his "real" temp was almost 40. (for those who don't live in canadian hospitals, let me convert that for you. 38.1C is 100.5F. 40C is 104F. yeah.) so after a quick consult with his homecare nurse, we trekked off to emerg.

they did some bloodwork, and it turns out that his white cells are WAY higher than they were last night, and now his bicarb is low (which means his blood is more acidic than usual. i can't explain this part. i used up all my knowledge of phlebotomy earlier. sorry). so doc decided to admit him for a few days, at least until his blood culture comes back on monday. this way he can get some IV antibiotics to help him fight off whatever it is that bugging him right now. they're assuming it's viral, because they can't find anything. no sign of infection in his ears, throat, tube site or urine.

and earlier, when i got back from getting some clothes etc, he was on oxygen. it seems that while i was gone, his sats dropped down to the low 70s again, and the docs ordered low 80s, so they had to put him on O2 for a while. right now he's about 79 to 83%. once he falls asleep, those numbers should go back up. (hypoplasts/single ventricle kids are the opposite of the rest of us. when we sleep, our oxygen levels go down. when they rest, theirs go up.)

so now we're in his room on D7-400. he's febrile again, a little over 39 degrees under his arm (which means it's a little over 40), so now we're watching for seizures and waiting for the tylenol to kick in. and in the meantime, he's watching treehouse (go, diego, go... thrilling... why does he shout so much?!?!?!?!?!) and i'm blogging and chatting with a friend.

so, yeah. we're here for the weekend. but i'm reachable. i'll be online a lot of the time, and i have my cell phone on (i'll post the number on the sidebar, in case anyone wants to make arrangements to drop off a chai latte for me, hint hint). so, yeah, basically, we're just hanging out here for the weekend. i'll keep the blog updated as i know things (like what it means that his bicarb is low... you know me, i'm determined to figure that out!! LOL), and any results from his culture. we're crossing all our crossables that this isn't sepsis, but i'm maintaining that it's a virus, since he's done this twice before (last november, and again in may), and it was viral. so yeah, we just have to let this run its course, and then we'll be home. i don't think we'll be here long.

i'll keep you updated. i'm on FB, and i'll be keeping my status updated, and i'll update here, as well. so, i guess i'll talk to you later. :)